Friday, December 17, 2010


I wish every person that reads this blog could see Judah in person to be able to fully appreciate the incredible improvements and progress he's made in just the last month! That boy is so on a roll, and it's been an amazing leg of his journey. I feel immeasurably blessed to be a part of his journey!

He's in a new size! 6-9 months - bring on the new clothes!! It's fun to see him changing as his body grows. He's thinned out somewhat and he looks older. And he can finally wear shoes - victory!

Judah is learning the words "No, no" and "that's not for you". He's finally reached a stage in which he can get to things and into things that he shouldn't - victory! As I write Judah has managed to get himself completely under our tree so he can reach that one illusive ornament he must have! I can't help but smile and feel an incredible amount of pride:)

Judah also started waving a couple weeks ago. We were saying bye-bye to Daddy,
and he just started waving both hands like crazy! His is probably the most enthusiastic wave I have ever seen. And he waves to just about everybody on cue! Meaning, I have added "wave" to the
list of words Judah understands - victory!

After several months of repetitive efforts made by Mommy & Daddy...and Lydia, Judah now signs "all done" & "more" - victory!

My Little Lion has also become somewhat of a
Little Piggy. He eats like he's making up for lost
time! He has a target calorie range per day, and on average he's at the very high end of that...and over on some days. He's only getting water through his tube during the day & overnight, and just 4 oz. of whole milk/Carnation after he's already asleep - victory!

Judah is sitting up! Most of the time he has to hold himself up with his arms, but he can balance hands-free for a couple minutes at a time - victory!

We also got Judah's new stander! It's awesome, but the best part is knowing that Judah is strong enough and far enough along in his development to tolerate it. And he got to this point much sooner than I thought he would - victory!

It's been such a cool experience to see God's work in Judah's life lately. He brought Jud
ah through a tough, long bout with RSV bronchialitis without

a hospitalization; and has provided an allergist/pulmonologist who is kind and pro-active. He has provided an IFSP team that genuinely loves him and wants to see him succeed, thereby providing the best possible help for him and "training" for me. God has delighted us with this charming, jolly, affectionate little boy; and I know that it's God who has allowed Judah all of these successes! He holds Judah in His hand, and I believe that He rejoices with us over every small victory.

Medication Update

I'm officially trying not to be anxious now that we're on the 3rd day past needing a new Norditropin "pen". I've been on the phone multiple times with our Walgreens Infusion case manager, the W.I. intake person, the doctor's office, and a Medicaid case manager. W.I. seems to be playing a little bit of phone tag with the doctor's office, but at least the calls are being made. Once W.I. has the information they need from the doctor's office for Medicaid, then the ball will be in Medicaid's court...and I have no idea how long it will take for them to give approval to W.I. for delivery so we can resume Judah's treatment. I'm not really sure my phone calls are in any way effective. Or if they're just frustrating the people I'm calling. But the phrase "The squeaky wheel..." keeps running through my mind. I'm doing my best to be respectful when I call, and not give the impression of laying blame at any one's feet. I'm not sure who's at fault, and it certainly wasn't intentional. I just keep telling the people I talk to (or the voicemail systems) that I'm only looking for a status report and making sure things are progressing for Judah. Because really, somebody has to be responsible for the overall care of and advocacy for Judah, and that person is me. I take that God-given responsibility and privilege very seriously. Well, enough said. Thanks for praying dear friends and family...and even if I've never met you, I include you in that statement, because you're invested, too. I'll keep you posted!

Friday, December 10, 2010

A Prayer Request

This quick note is just to make you all aware of a...hiccup, so to speak, with Judah's growth hormone medication. It was all set to be delivered here on Tuesday, but this morning our Norditropin case manager (whom I looove, by the way) called me to let me know that Medicaid has denied coverage of this drug due to non-compliance during the summer months. Remember with me now, that was when Judah was vomiting on the old medication, Nutropin, and we had several weeks of being on and off again until the dr. finally took him off for good. He then gave us a sample pen of the new drug, Norditropin, to try to make sure that Judah could tolerate it. We used 2 sample pens while we waited for the insurance company to switch over to covering the new drug...which involved lots and lots of paperwork and documentation, from what I understand. Apparently, somewhere in there, Medicaid thinks that the doctor didn't "follow the rules" and so is refusing coverage. It's complicated and I don't really understand it myself; but here's the bottom line: Judah needs this medication or he won't grow. It's hard not to become discouraged because of everything we went through over the summer. We finally got into a pattern of using the drug every night, no vomiting, and GROWTH; and now this.

So, while you all pray about this with me, I will choose to believe and remember that God saw this coming, and He's totally in control. No matter the outcome.

Thanks for praying!

Wednesday, December 8, 2010

I just couldn't wait...

...any longer to get this down! I'm so way behind on my posts, but I just got my "new" computer all set up today (thank you, thank you, so, so much Mr. & Mrs. Gus!!!), and I was going to do everything in order. I have posts written in a notebook, and then there's all the things I want to say about how Judah is doing lately - which is FANTASTIC (well, developmentally...not really physically so much since he's just getting over RSV Bronchialitis...which did NOT land him in the hospital like the other 2 bouts with it did - PTL!!), but I just can't wait any longer before getting this wonderful-ness down on "paper"! Judah. Ate. Two. Full. Meals. Today. Orally. Without any supplementing through his button. DO YOU KNOW HOW WONDERFUL THAT IS?!?!?! 10 months ago Judah got an NG tube, because he was no longer eating what he needed to on his own. Today is the first day in 10 months that he has eaten an entire meal all on his own...and he did it TWICE! That's over 400 calories that he chewed and swallowed! Which means that I haven't given him any nutrition through his G Button...except for water. The child needs LOTS of water. Anyway, like I said, I just couldn't NOT say anything about this any longer. Praise Jesus! Hallelujah! Seriously, Lord, THANK YOU! OK, let the tears of joy commence!:)